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Mikeb123 last won the day on February 28 2016

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  1. Hey everyone. It's been maybe 3/4 months since my last post (I was addicted to this site at one point, desperately looking for help) but I wanted to give everyone an update and ask some questions. Long story short I have had manageable OCD/anxiety from probably late elementary school to senior year of college. With some ups and downs along the way, but overall pretty manageable. In October I got sick and the physical symptoms didn't get better at my normal rate from colds/flus, at the same time I was having increasing OCD/anxiety. First I thought it was just anxiety from being sick for so long, but I looked deeper into it and found out it was probably pandas. Also it turned out that when I was super young I had pandas (that kind of pushed me over the edge into truly believing this was my situation) so I now had to move fast and fix this issue. Over the months from October to March my physical symptoms improved but my mental ones worsened and my bloodwork kept showing high mycoplasma iGG (whichever the one that shows a noncurrent infection) and antidnase b (strep) Fast forward to trying different antibiotics, anxiety meds, oil of oregano, sinuplasty (sinus surgery in case the strep was in my sinuses,) so many more things, all didn't work. After getting to a point where I was considering dropping out of school and even maybe going to a mental hospital to restore my sanity, I decided to go for an IVIG in March. I would have made this move much sooner but the price was so high that I kept delaying it. I'm talking around 20K since my insurance is the worst. Also keep in mind at this point I was on Ceftin and Xanax, which both helped, but only slightly. Fast forward to May and here I am again with good and bad news. Good news the IVIG at least somewhat helped, that's obvious. I'm very bad at self observing and giving numbers but the fact that I haven't checked this website in a month or 2 when there was a point that it was almost all day every day shows improvements were made. Bad news, I am back which means something is up! I am out of school, which is not good for an OCD mind (more free time to think!) and my anxiety symptoms have been only getting worse (where I would say for the past 2 months they were slowly but surely getting better) Now it is possible that my anxiety is from being home and that's it, but it's pretty severe and because I am having some physical symptoms too, I think maybe I might need to do round 2 of IVIG.... Again I really don't want to do this considering the price but if it's for my mental sanity it'll be done, my family just wants me to be happy and my old self again. So my question for you all is do you think going more than once for IVIG can really be a big difference or is it just one and done? I know some people on this forum that do IVIG for their kids multiple times a year but I can't do that money wise. Any advice would be helpful, thanks! Mikey B
  2. Hey everyone! Just did my IVIG on Tuesday and Wednesday. Those days were bareable as well as Thursday. I'd say maybe even I saw some improvements, but today has been horrible. I feel like I might be dealing with a myco herx. Since my myco p iGG number is very high (1095, with over 320 being positive) I am trying to let myself think that's the cause. I haven't had anxiety this bad since getting sick back in October.... Anybody have any positive stories they can share with me to help me cope with this anxiety? Or any medications to help calm me down. I'm currently on ceftin, Xanax, Advil, and Zofran (nausea) when needed. Thanks! Mike B
  3. My situation is quite complex due to the number of things I am currently positive for. I have high antidnase, myco p, ebv (mono), and possible Lyme. I just know that when I was younger strep was my main issue. My current belief is that I got mono first and that that is what left me suseptiable to all these other problems. The weirdest thing is that now most of my physical symptoms are gone but I would say my anxiety is at the worst it's been since getting sick back in October... I don't have much sinus pain or pressure. Maybe light stuffiness but that's really it. Lastly, and this is the weirdest part. Every time I've been checked by a doctor over the past 10 visits (in the past 4 months) they've always said my left nostril looked inflamed. Now they're saying it's my right one... Anyways Monday I get the results from the nose swab. The CT scan just showed some blockage in my sinuses and a deviated septum. Hopefully the swab has more detailed diagnosis. I just want to see some noticeable improvements! Anyways I appreciate all the advice/words you have to off wisdom seeker. I sent you a direct message if you're able to I'd love to get more details. Thanks! Mike B
  4. So I have tried many methods to treat my anxiety/OCD and so far the only things I have seen any benefits from is Xanax. Not compete resolution but a great improvement. Tomorrow I am getting bloodwork back for strep, myco, ebv (mono), and Lyme. If these numbers are going up that explains why my anxiety seems to only be getting worse by the day My question for you all is what should I do from here going with the assumption all the numbers are up? My first idea is to get a FESS (Functional endoscopic sinus surgery) that is basically where they remove bacteria and other things from the sinuses. I remember vaguely when I was younger having a pandas flair where there was strep in my sinuses. It sucks because my mom is no longer alive to confirm this, but I'm pretty sure that was an issue. It would also explain why the strep I have isn't going down (since its stuck in my sinuses) I am literally on an antibiotic my mom would swear by as being helpful in my strep flairs, but now it's not doing the trick... The second option (the idea dr. L is encouraging) is to do ivig. The process scares me because it seems that for some people it makes people worse/they might see long term improvements but have a downhill battle first, and right now I feel like this is the longest I can possibly take. The third and final idea (if you guys have any more id love to hear them) is steroids. I have yet to try this method but I am scared of this option too since I had wisdom teeth surgery in 2011 where I was given prednisone and while I was on it I had my first panic attack in over 10 years. At the same time though I truly feel that how I feel now is worse than how I felt during that panic attack since this has just been a 5 month constant downhill issue If I could just see some more improvements I'd be happy. Any suggestions/other ideas would help. At this point I've basically given up on antibiotics. Thanks Mike B
  5. If pandas really is just inflammation of the brain, (I know that is a super basic definition of the disease) is there a way to get your brain scanned for inflammation? I ask this because while I am 70% I am dealing with a pandas flair, I have had OCD my entire life, OCD that is mostly focused on my mental health. So it makes it hard for me to say whether my really bad anxiety/OCD right now is just regular OCD that I've let get bad by delving too deep into pandas research or if it's actually pandas. The fact that this all came about after I got sick in October makes me feel like this is pandas, but I just wanted to see if there was a way for me to make sure? Thanks Mike b
  6. Just thought I'd ask one last time since tomorrow is the day I get the mycoplasma p medication. Anybody have any positive results for myco p with any specific antibiotic? I know Z-packs don't work for me but besides that I am open to anything. Levaquin, avelox, doxy, mino, and biaxin are the 5 I'm most likely considering. Any advice would be greatly appreciated. Thanks Mike B
  7. Thanks Kakrpa! I got Xanax the day after you brought it up and I definitely feel some improvements since taking it. Worrieddadnmom I actually tried a Z-pack very early on in my treatment and didn't seen many improvements in mental health. Now that I know I have strep and myco too maybe giving it a little more time (I only did 5 days of it at the time) would help me out. mama2alex I don't really think that eating healthier will fix my mycoplasma that much, it might help a little bit but I don't see it changing things completely. If it did for your child that is super awesome, but considering that I am 21 and have eaten unhealthy my whole life and am just now dealing with pandas flair ups for the first time in 15 years I feel like eating healthier wouldn't be crazy beneficial. I might try it though, just because I am running out of options On another note I keep reading things about how antibiotics that are meant for treating mycoplasma only stop the multiplication of the disease, but don't actually kill the mycoplasma... If that's the case how does one get the mycoplasma numbers to drop and through that feel a decrease anxiety? Also I am planning on either doing biaxin, doxy, mino, or avelox. What have you guys seen as the most beneficial for treating myco p? Thanks!
  8. Also I'm starting avelox tomorrow. So far all I've tried is ceftin and z pack, both of which haven't done anything beneficial for my mental issues. Anyone know of any success with avelox in particular?
  9. I have been trying diffenent types of antibiotics with no avail and my anxiety/OCD is now at an unmanageable level. What is the best instant relief for this situation? I'm guessing either serious anti anxieties like Valium or maybe setting up a plasma exchange? I currently only have diagnosed high strep and myco p. Any suggestions would be appreciated.
  10. Hey everyone, My name Is Mike B, I've been posting a lot on here recently due to my issues with severe anxiety/ocd since getting sick in early October of last year. As a young kid I got strep a lot (I am 21 now) so I pushed the strep thing a lot to all my doctors. A month after getting sick I was on Ceftin. (The one antibioitic my mom claimed fixed my pandas issues/strep) The problem is that while the ceftin did help with a lot of my physical symptoms, it did nothing for the anxiety/ocd. I recently saw Dr. Latimar and was told to get more blood work done on mycoplasma as well as other possible triggers. Well today I found out that I have a very high number for Mycoplasma. BING. This made sense due to the fact that a majority of my remaining physical issues fall in line with the symptoms of Myco P. So now I am really hoping that that's the only other issue I am dealing with. Anyways since it has been 4 months of being sick, my anxiety and ocd have gotten really bad, so bad to the point where I am considering dropping out of college this semester. My question for everyone is, if you have dealt with a mycoplasma issue in the past what was the antibiotic/treatment that worked the best for you? From a lot of online research that I've been doing it seems like Biaxin is a popular and successful choice, but I also read things about that antibiotic causing anxiety problems for some, which is the last thing I need right now..... Anyways thanks to anyone that can help! Mike B
  11. So a quick update; turns out I have mono. The EBV IGG numbers are supposed to be below .9 and I'm currently at 4.1. So it's pretty high up there. Now it's been confirmed that I have strep and mono. I just got bloodwork today to check for mycoplasma, really hoping I don't have that. 2 things is already a lot to deal with. The weird thing for me is how it really feels like my brain is dealing with a lot more problems from this sickness than my body is. I have definitely felt tired these past few months but I never even thought I had mono until the doctor brought it up to me and eventually got me checked for it. Anyways my question now is I recently read online that the best way to treat mono is with vitamins, amino acids, and rest. I recently started taking an emergen-C pack and although this was only a couple of hours ago I have felt an increase in anxiety and OCD, not improvements, since finishing my packet (it's a fair amount of vitamin C). I'm really getting frustrated because I've been dealing with steady increases in anxiety and OCD now for the past 4 months and it seems like every time I try something to help the problem become less severe it either does nothing or makes things worse. Is it possible that maybe my immune system is just in shock from such a high dosage of vitamin c and that I should stick with it for eventual improvements (hopefully) or should I maybe just stop the vitamin c route all together? Thanks Mike B
  12. Just a quick update for everyone. I retook ceftin starting the 15th and have been extremely up and down mood wise. Some days are pretty promising while other days are horribly bad. This medicine perscription goes on until the 30th and I'm determined to finish it. I recently remembered about how when I was super young and had horrible pandas problems at around 4 years old (rages and all that good stuff) I used to take Motrin to help with the problems. Sadly since my mom passed away in 2013 I can't ask her directly the benefits of this (all I know is that ceftin is the medicine that is constantly brought up by her for me when it comes to strep infections/pandas in all my childhood records) but do you think if I added Advil to the ceftin that could help push the bad days away or at least make them less severe? Has anyone ever heard of an antibiotic/over the counter combo doing the trick? I'm obviously pretty desperate at this point and just want to see some progress since I've been dealing with increasingly worse anxiety since this started in October. Thanks!
  13. I have been having a lot of ice cold and burning hot sensations all over my skin the past couple of days, does this sound like lyme or another kind of infection that can come as a result of untreated strep? Thanks to anyone with any ideas.
  14. Thank you so much for your suggestions! I'll definitely try to get the augmentin you're talking about as well as the amino acid. Also I had 2 follow up questions. How long was your DS sick for before getting on the augmentin and how long did it take before you noticed the improvements from the medication? Thanks again!
  15. I recently posted earlier about myself, but I had some more questions that hopefully someone could help me with. I am a 21 year old college student who has been sick with some kind of infection (probably strep) for over 3 months now. Along with this infection has come horrible increases in my ocd and anxiety. I recently was told that my antidnbase numbers (strep bloodwork) were higher than normal (I believe 100 is normal for adults, I was at 188). I was never actually diagnosed with strep during these past 3 months of feeling physically sick. When I was at the peak of my strep symptoms the doctors messed up and didn't send the culture in, so that makes things more difficult. Anyways my question for you all is what is a good antibiotic you have seen to get rid of a lingering infection related to pandas. I've been having a bunch of symptoms (ears, nose clogged, tickling throat, stomachache, nausea, headaches, hot flashes, etc) and so far I have only taken a z pack, which didn't work, and ceftin, which got rid of a horrible cough I had for a month but that's really it. Also I can't take penicillin because I was told by mom that I'm allergic. Any recommendations would be greatly appreciated.
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